reconstruction options

I am 42 years old, married with a son aged 10 and a daughter aged 6. I was recently diagnosed with DCIS and told I would need a mastectomy the week before I relocated from the East Midlands to Cornwall. The timing is awful as my move was supposed to be a new start after a horrible experience of being bullied at work (I’m a university lecturer), which led to severe depression a year ago. Because of the house move I was left in limbo with a diagnosis but no follow up. I now have a consultant in Cornwall and am currently trying to decide what type of reconstructive surgery to opt for. I am very large breasted (34HH!) and have decided that I will also go for a reduction on my unaffected breast.

My consultant at the Royal Cornwall is steering me towards an implant because he says that I don’t have enough fat on my back. Ironic as a year ago I would have, but I’ve been going to the gym and have lost weight and toned up. He doesn’t advise a TRAM because of my age. The other alternative is a DIEP - I have lots of fat on my stomach despite the gym! - but he says that I need to think carefully about this because it’s such a long op. Plus, this isn’t an op he does as regularly and won’t be able to do it at the Royal Cornwall. I’m thinking that maybe I should look for a consultant elesewhere in the SW - in Exeter or Bristol - with more expereince of this op. On the other hand, my consultant showed me pics of his work using implants and the results looked good.

My concern is what would give the most natural result and would require the fewest follow up surgeries. Even if, in the shorter term, recovery time from a DIEP would be longer.

I would love to hear from anybody with experience of breast reconstruction in the SW.

Deborah

Hi Deborah

Sorry about your diagnosis, which is hard enough to deal with on it’s own, but with your move on top of that, you must feel very stressed.

I am not in the same area as you, but thought my experience might be of some help to you - as we can’t read each others profiles at the moment, I will give you a bit of my info.

I was diagnosed In January this year, Grade 3 invasice ductal, 6/11 nodes afftected (I am 50). I had my op at the end of Feb - I too am large breasted - 38F - and went for a reduction on the other side at the same time. I had a LD recon (where they use the back muscle) with implant. I am now a 38D/DD. (DD on the recon side.).

I have not had any problems with my back and the scar is covered by my bra strap. It’s still early days with the recon, but at the moment I am thinking if I had to do it again, I would go for implant only - even if it meant taking even more away from the other side. I have to have corrective surgery on the recon (which, I am told, is quite normal - a recon is rarely obtained in just one op). The muscle has pulled back, making it nearer my underarm and leaving a dip at my cleavage. But with my bra and clothes on, it looks OK.

The reduced side is perfect - too perfect for the other side to live up to! I am so glad I had it done and, hopefully in time, the recon will be more acceptable to me.

Good luck and look at all your options. I have learnt so much post-op, mainly from reading other people’s experiences on this site, that I wish I had known before my op - but when you are diagnosed there is just so much to take in.

Take care

Anita

Hi Deborah

I have just got back from my second consultation with Plastic Surgeon, I will be having my op at Salisbury Hospital in Wiltshire, I live in Yeovil just over 1 hour away from hospital. I think this is the centre most women use in this area of the SW. I have opted for a DIEP with reduction of “good” boob, I am a a 36 C/D but would like to return to my pre tamoxifen size of 34 B!!! Mr Tiernan was initially not happy to do both in one op but I have persuaded him. I just want to get it over with and move on, going back and forward for out patient appointments is a real pain!!!

I had my mastectomy last Aug 06 followed by chemo and am now on tamoxifen. I recovered within a few days of mastectomy but from what I have read it will be a longer process of recovery from the DIEP, but after being lop sided for the last year I am willing to put up with the inconvenience and pain. The waiting list is approx 18 weeks but that probably means 28 weeks so am not expecting to receive call up until Feb next year.

It such a pain not being able to see other people profiles but just in case your wondering I am 44.

Clare

Hi Deborah,

I was diagnosed with high grade DCIS on the 13th June (I am 39). I had my surgery on the 6th July. I was a 34 JJ pre surgery and I am now a 34 D. My consultant said that a mastectomy was not required as I had ample breast tissue to reconstruct with and he was confident that the DCIS was contained in a small area- get results back tomorrow. I have had a wide excision (including removal of areola and nipple) and reconstruction of the left breast (using the clear breast tissue) and reduction of the right breast so that I match. I will be having rads soon and possibly chemo (dependant on tomorrows results). For me, immediate reconstruction and reduction of the ‘good’ breast was something that I wanted and important to my mental well being but I know other people who have not had reconstruction and are happy with their decisions. I did ask for a reconstruction using stomach fat (thinking tummy tuck) but Consultant said it was a good try but not suitable for me unfortunately. I live in London so cannot help you with your dilemma re: consultant but getting a second opinion won’t hurt if you are having doubts.

Kat x

Thank you all for replying. I’ve made several attempts to reply but have bene having problems - I’m a mac user. Have been referred to Derriford for discussion of DIEP. See the surgeon next week.

Deborah

I will have a mastectomy next month and I have been given the choice for an immediate reconstruction or a reconstruction at a later date, I will need radiotherapy afterwards and I know that this can damage the implant.

I have read all the pros and cons but I cannot really make my mind up and I would like to hear from somebody who has undergone immediate reconstruction. My gut instinct is to have everything done in one go but is it really the best option???

Régine

Hi Regine,

I did not have a mastectomy but had reconstruction done straight away (over 1/3 of breast removed). This was the best option for me as I have lived with a body image problem all of my life. I am starting radiotherapy sometime in August and have some concerns- hardening and shrinking of the breast being my main concern. I have been reassured that it is rare and if it did happen then I can have the breast reconstructed again if need be. I am happy with this and I will let you know how I get on.

Whatever decision you make, will be the right decision for YOU.

Best wishes,

Kat x

Hi Deborah

Don’t know whether this is of any use to you but I had a reconstruction - latissimus dorsi flap (ie from the back) with an implant as well - nearly 5 years ago at the same time as a mastectomy. I’ve been really pleased with the results (although I did have some problems initially) and my “new” breast has always felt “mine” if that makes sense. I gather sometimes people feel their reconstruction is not part of them but that has never been the case for me - it feels just as if it was the original breast albeit a bit battered!! One of the other advantages of having it done at the same time as the mastectomy was that the surgeon could preserve the nipple which again I thin has made a big difference. I even went topless last summer in Spain!!

As I said, I did have some problems initially with a low grade infection which then led to quite a lot of scar tissue forming. I ended up having to go back in and have the implant replaced but since then have had no further problems with it.

I also sympathise with you over the move/change of jobs. I too was diagnosed 2 weeks before changing my job (luckily I wasn’t moving as well) and had to make some difficult decisions about work. However I did take up my new job, had time off for the op and then went back part time during chemo. It was the best decision I could have made and I am so glad that I stuck with the new post despite the cancer. So I really hope it works out for you too. Do post again if you need any more nformation/support - and good luck whatever you decide. Kay

Hi Deborah

Sorry this post is a bit late but I’ve only just seen it.

I’m sorry too about your diagnosis, especially as it coincided with the move.

I live in Cornwall too, but nearer to Plymouth where they have an excellent record of reconstructions. I’m not saying further West doesnt, but I understand they haven’t been going so long!!

I was 41 when I had a Tram Flap op in Plymouth, though I know all circumstances are different and I quite slim, though with 36A bust. I am really thrilled with the results. I don’t know if it would help but I know once when I was in the Clinic I met a lady from Falmouth who had been referred up to Derriford by Treliske. Mr Drabble was my surgeon and he is a really lovely man and has an excellent reputation, you may like to see if you can get a referral to at least discuss any other options.

Hope that helps and sorry if it’s a bit late. All the best with the next steps.

TAY X

ps - Should have said mine was an immediate reconstruction Tram

TAY

Hi Deborah

I live all the way in SA but just want to have a little say too. I had a mastectomy back in 2003. I waited 10 months, then I felt I was ready to have a recon. I personally felt the need to get over one operation, then accept it and go for the next stage. I do not regret it. I had the chest expander put in and with the ‘pumping up’ and then the silicone boob put in, it all took around 6 - 8 months. I felt comfortable with it all. I did go down with brain cancer last year though, and had to have chemo so this changed the silicone boob so had it redone this year. I am so happy with the results, I would do it all again. I have mentinoed on this site before that if anyone would like to see pictures of my recon I am quite happy to email them to anyone. I have posted on the breakthrough website if you should want to go and get me email address. I was a 34B and am now a 34C (still small though, I think).

Thanks for all your supportive comments. Sorry for the delay in relying - have just got back from v wet trip to Ireland for a 90th birthday party. I probably wouldn’t have made the effort to do this before my diagnosis!

I have now had an appointment with Mr Morris from Derriford and I’m seeing him again tomorrow at Treliske. Still hoping to have immediate reconstruction via DIEP and a reduction.

Am trying to stay positive and eat healthily, tho not always easy. Have been reading up about BC and nutrition via book recommended on Penny Brohn website. All seems to make good sense, but am finding it hard to go without red wine!

Also, since I last posted I have been offered and accepted a job in Cornwall! This really gives me something to work towards post op.

Deborah x

Hi Deborah

I’m glad you have an appointment, and hope all goes well.

I know someone locally who had Mr Morris for a DIEP recon and she was really pleased with the results, I think they all specialise in different ops and it sounds like he’s the man for that one!!

Congrats too on your Cornwall job, can’t think of a better county to work in, though I am a bit biased!

Seeing beyond the next hurdle is a brilliant way to do it, and has kept me going through the last two years.

I’ll be thinking about you tomorrow

TAY X

Rather frustrating appt as still don’t have a date for surgery.

However, now established that reconstructive surgeon thinks that delayed DIEP after mastectomy is advisable even though I’ve been told that I’m unlikely to need radiotherapy. The choice is mine and I could insist on immediate reconstruction. However, have had it brought home that I only have one chance at DIEP and in the (I’m told) unlikely case that the histology reveals anything more serious than DCIS requiring radiotherapy the treatment would have a disastrous impact on the flap. Therefore have agreed to skin-saving mastectomy with a temporary expander, followed by provisional appt for DIEP reconstruction 2-4 weeks later if no radiotherapy required.

However, given what I’ve read about cancelled ops on these forums I’m a bit sceptical about the promise of only having to wait a few weeks.

Have been promised that I will get given a surgery date on Monday!

The waiting is incredibly stressful and has really hit me over the last couple of days and I’m back to feeling low and weepy, having been quite cheerful and pragmatic for the last few weeks. But, really, having been diagnose don 28 June I just want it over. And as I’ve been told my DCIS is high grade and covers a wide area, it feels like a time bomb…

Deborah

I thought that I’d update you all on my progress. I had a skin-saving mastectomy on 17 September with a saline expander. I also had a reduction on the unaffected breast: down from 34HH to 34DD. I found the whole procedure pain free and I’m delighted with the appearance. My plastic surgeon marked me up with the same incision for the mastectomy as the reduction so my scars don’t show in a bra and I can even wear low cut jobs. Given the saline expander is temporary, the appearance is excellent. Mr Morris at Derriford is truly a genius and an artist.

However - and it’s a big one - despite my breast surgeon estimating only a 2-4 % risk of invasive cancer on top of the DCIS, the results of the histology on 1 October showed a 12mm grade 2 invasive carcinoma, removed with good clear margins of 7mm. I’m really glad that Mr Morris advocated delaying the DIEP (radiotherapy apparently ruins this kind of reconstruction).

This means that I’m going to have my lymph nodes sampled on 16 October and another 2-week wait for the results. Despite all this I’m feeling remarkably calm. I’m just glad that the carcinoma was found and is out of my body, given that I never presented with a lump and it wasn’t detected by my mammogram. I have a lot to thank my GP for - she took my concerns seriously and referred me.

My OH, however, is devastated and has been wrapping me up in cotton wool and won’t let me do a thing around the house! My daughter (6) is desperate for me to do all the things I usually do with her. SO I’m going to attempt to try and get things back to normal as far as I can. I’m going back to my 3-day a week job - my personnel dept are surprised but supportive. Jenni Murray’s account in the Guardian this week of working through her BC treatment really inspired me.

Deborah x